The long slow slide into the abyss

For a long time, the absent-mindedness could be put down to poor hearing or the medicines. But eventually Jonathan Franzen had to accept the truth: his father had Alzheimer's disease. Earl Franzen was losing his memory, his mind, his senses - and yet somehow his self survived

Here's a memory. On an overcast morning in February 1996, I received in the mail from my mother, in St Louis, a Valentine's package containing one pinkly romantic greeting card, two 4oz Mr Goodbars, one hollow red filigree heart on a loop of thread, and one copy of a neuropathologist's report on my father's brain autopsy.

I remember the bright-grey winter light that morning. I remember leaving the candy, the card, and the ornament in my living room, taking the autopsy report into my bedroom, and sitting down to read it. The brain (it began) weighed 1,255g and showed parasagittal atrophy with sulcal widening. I remember translating grams into pounds and pounds into the familiar shrink-wrapped equivalents in a supermarket meat case. I remember putting the report back into its envelope without reading any further.

Some years before he died, my father had participated in a study of memory and ageing at Washington University, and one of the perks for participants was a post-mortem brain autopsy, free of charge. I suspect that the study offered other perks of monitoring and treatment which had led my mother, who loved freebies of all kinds, to insist that my father volunteer for it. Thrift was also probably her only conscious motive for including the autopsy report in my Valentine's package. She was saving 32 cents' postage.

My clearest memories of that February morning are visual and spatial: the yellow Mr Goodbar, my shift from living room to bedroom, the late-morning light of a season as far from the winter solstice as from spring. I'm aware, however, that even these memories aren't to be trusted. According to the latest theories, which are based on a wealth of neurological and psychological research in the last few decades, the brain is not an album in which memories are stored discretely like unchanging photographs. Instead, a memory is, in the phrase of the psychologist Daniel L Schacter, a "temporary constellation" of activity - a necessarily approximate excitation of neural circuits that bind a set of sensory images and semantic data into the momentary sensation of a remembered whole. These images and data are seldom the exclusive property of one particular memory. Indeed, even as my experience on that Valentine's morning was unfolding, my brain was relying on pre-existing categories of "red" and "heart" and "Mr Goodbar": the grey sky in my windows was familiar from a thousand other winter mornings; and I already had millions of neurons devoted to a picture of my mother - her stinginess with postage, her romantic attachments to her children, her lingering anger toward my father, her weird lack of tact, and so on. What my memory of that morning therefore consists of, according to the latest models, is a set of hardwired neuronal connections among the pertinent regions of the brain, and a predisposition for the entire constellation to light up - chemically, electrically - when any one part of the circuit is stimulated. Speak the words "Mr Goodbar" and ask me to free-associate, and if I don't say "Diane Keaton" I will surely say "brain autopsy".

My Valentine's memory would work this way even if I were dredging it up now for the first time ever. But the fact is that I've re-remembered that February morning countless times since then. I've told the story to my brothers. I've offered it as an Outrageous Mother Incident to friends of mine who enjoy that kind of thing. I've even, shameful to report, told people I hardly know at all. Each succeeding recollection and retelling reinforces the constellation of images and knowledge that constitute the memory. At the cellular level, according to neuroscientists, I'm burning the memory in a little deeper each time, strengthening the dendritic connections among its components, further encouraging the firing of that specific set of synapses. One of the great adaptive virtues of our brains, the feature that makes our grey matter so much smarter than any machine yet devised (my laptop's cluttered hard drive or a world wide web that insists on recalling, in pellucid detail, a Beverly Hills 90210 fan site last updated on 20/11/98), is our ability to forget almost everything that has ever happened to us. I retain general, largely categorical memories of the past (a year spent in Spain; various visits to Indian restaurants on East Sixth Street) but relatively few specific, episodic memories. Those memories that I do retain I tend to revisit and, thereby, strengthen. They become - morphologically, electrochemically - part of the architecture of my brain.

This model of memory, which I've presented here in a rather loose layperson's summary, excites the amateur scientist in me. It feels true to the twinned fuzziness and richness of my own memories, and it inspires awe with its image of neural networks effortlessly self co-ordinating, in a massively parallel way, to create my ghostly consciousness and my remarkably sturdy sense of self. It seems to me lovely and postmodern. The human brain is web of a hundred billion neurons, maybe as many as two hundred billion, with trillions of axons and dendrites exchanging quadrillions of messages by way of at least 50 different chemical transmitters. The organ with which we observe and make sense of the universe is, by a comfortable margin, the most complex object we know of in that universe.

And yet it's also a lump of meat. At some point, maybe later on that same Valentine's Day, I forced myself to read the entire pathology report. It included a "Microscopic Description" of my father's brain:

In the notice that we had run in local newspapers nine months earlier, my mother insisted that we say my father had died "after long illness". She liked the phrase's formality and reticence, but it was hard not to hear her grievance in it as well, her emphasis on "long". The pathologist's identification of senile plaques in my father's brain served to confirm, as only an autopsy could, the fact with which she'd struggled daily for many years: like millions of other Americans, my father had had Alzheimer's disease.

This was his disease. It was also, you could argue, his story. But you have to let me tell it.

Alzheimer's is a disease of classically "insidious onset". Since even healthy people become more forgetful as they age, there's no way to pinpoint the first memory to fall victim to it. The problem was especially vexed in the case of my father, who not only was depressive and reserved and slightly deaf but also was taking strong medicines for other ailments. For a long time, it was possible to chalk up his non sequiturs to his hearing impairment, his forgetfulness to his depression, his hallucinations to his medicines; and chalk them up we did.

My memories of the years of my father's initial decline are vividly about things other than him. Indeed, I'm somewhat appalled by how large I loom in my own memories, how peripheral my parents are. But I was living far from home in those years. My information came mainly from my mother's complaints about my father, and these complaints I took with a grain of salt; she'd been complaining to me pretty much all my life.

My parents' marriage was, it's safe to say, less than happy. They stayed together for the sake of their children and for want of hope that divorce would make them any happier. As long as my father was working, they enjoyed autonomy in their respective fiefdoms of home and workplace, but after he retired, in 1981, they commenced a round-the-clock performance of No Exit in their comfortably furnished suburban house. I arrived for brief visits like a UN peacekeeping force to which each side passionately presented its case against the other.

In contrast to my mother, who was hospitalised nearly 30 times in her life, my father had perfect health until he retired. His parents and uncles had lived into their eighties and nineties, and he, Earl Franzen, fully expected himself to be around at 90 "to see," as he liked to say, "how things turn out". (His anagrammatic namesake Lear imagined his last years in similar terms: listening to "court news", with Cordelia, to see "who loses and who wins; who's in, who's out".) My father had no hobbies and few pleasures besides eating meals, seeing his children, and playing bridge, but he did take a narrative interest in life. He watched a staggering amount of TV news. His ambition for old age was to follow the unfolding histories of the nation and his children for as long as he could.

The passivity of this ambition, the sameness of his days, tended to make him invisible to me. From the early years of his mental decline I can dredge up exactly one direct memory: watching him, toward the end of the 80s, struggle and fail to calculate the tip on a restaurant bill.

Fortunately, my mother was a great writer of letters. My father's passivity, which I regarded as regrettable but not really any of my business, was a source of bitter disappointment to her. As late as the fall of 1989 - a season in which, according to her letters, my father was still playing golf and undertaking major home repairs - the terms of her complaints remained strictly personal:

It is extremely difficult living with a very unhappy person when you know you must be the major cause of the unhappiness. Decades ago when Dad told me he didn't believe there is such a thing as love (that sex is a "trap") and that he was not cut out to be a "happy" person I should have been smart enough to realise there was no hope for a relationship satisfactory to me .

This letter dates from a period during which the theatre of my parents' war had shifted to the issue of my father's hearing impairment. My mother maintained that it was inconsiderate not to wear a hearing aid; my father complained that other people lacked the consideration to "speak up". The battle culminated pyrrhically, in his purchase of a hearing aid that he then declined to wear. Here again, my mother constructed a moral story of his "stubbornness" and "vanity" and "defeatism"; but it's hard not to suspect, in hindsight, that his faulty ears were already serving to camouflage more serious trouble.

A letter from January, 1990, contains my mother's first written reference to this trouble:

Last week one day he had to skip his breakfast-time medication in order to take some motor skills tests at Wash U where he is in the Memory & Ageing study. That night I awakened to the sound of his electric razor, looked at the clock & he was in the bathroom shaving at 2.30am.

Within a few months, my father was making so many mistakes that my mother was forced to entertain other explanations:

Either he's stressed or not concentrating or having some mental deterioration but there have been quite a few incidents recently that really worry me. He keeps leaving the car door open or the lights on & twice in one week we had to call triple A & have them come out & charge the battery (now I've posted signs in the garage & that seems to have helped)... I really don't like the idea of leaving him in the house alone for more than a short while.

My mother's fear of leaving him alone assumed greater urgency as the year dragged on. Her right knee was worn out, and, because she already had a steel plate in her leg from an earlier fracture, she was facing complicated surgery followed by prolonged recovery and rehab. Her letters from late 1990 and early 1991 are marked by paragraphs of agonising over whether to have surgery and how to manage my father if she did:

Were he in the house alone more than overnight with me in the hospital I would be an absolute basket case as he leaves the water running, the stove on at times, lights on everywhere, etc... I check & recheck as much as I can on most things lately but even so many of our affairs are in a state of confusion & what really is hardest is his resentment of my intrusion - "stay out of my affairs!!!" He does not accept or realise my wanting to be helpful & that is the hardest thing of all for me.

At the time, I'd recently finished my second novel, and so I offered to stay with my father while my mother had her operation. To steer clear of his pride, she and I agreed to pretend that I was coming for her sake, not his. What's odd, though, is that I was only half-pretending. My mother's characterisation of my father's incapacity was compelling, but so was my father's portrayal of my mother as an alarmist nag. I went to St Louis because, for her, his incapacity was absolutely real; once there, I behaved as if, for me, it absolutely wasn't.

My mother was in the hospital for nearly five weeks. Strangely, although I'd never lived alone with my father for so long and never would again, I can now remember almost nothing specific about my stay with him; I have a general impression that he was somewhat quiet, maybe, but otherwise completely normal. Here, you might think, was a direct contradiction of my mother's earlier reports. And yet I have no memory of being bothered by the contradiction. What I do have is a copy of a letter that I wrote to a friend while in St Louis. In the letter, I mention that my father has had his medication adjusted and now everything is fine.

Wishful thinking? Yes, to some extent. But one of the basic features of the mind is its keenness to construct wholes out of fragmentary parts. We all have a blind spot in our vision where the optic nerve attaches to the retina, but our brain unfailingly registers a seamless world around us. We catch part of a word and hear the whole. We see expressive faces in a floral-pattern upholstery; we constantly fill in blanks. In a similar way, I think I was inclined to interpolate across my father's silences and mental absences and to persist in seeing him as the same old wholly whole Earl Franzen. I still needed him to be an actor in my story of myself. In my letter to my friend, I describe a morning practice session of the St Louis Symphony that my mother insisted my father and I attend so as not to waste her free tickets to it. After the first half of the session, in which the very young Midori nailed the Sibelius violin concerto, my father sprang from his seat with miserable geriatric agitation. "So," he said, "we'll go now." I knew better than to ask him to sit through the Charles Ives symphony that was coming, but I hated him for what I took to be his philistinism. On the drive home, he had one comment about Midori and Sibelius. "I don't understand that music," he said. "What do they do - memorise it?"

Later that spring, my father was diagnosed with a small, slow-growing cancer in his prostate. His doctors recommended that he not bother treating it, but he insisted on a course of radiation. With a kind of referred wisdom about his own mental state, he became terrified that something was dreadfully wrong with him: that he would not, after all, survive into his nineties. My mother, whose knee continued to bleed internally six months after her operation, had little patience with what she considered his hypochondria. In September, 1991, she wrote:

I'm relieved to have Dad started on his radiation therapy & it forces him to get out of the house every day [inserted here a smiley face] - a big plus... Actually, being so sedentary now (content to do nothing), he has had too much time to worry & think about himself - he NEEDS distractions!... More & more I feel the greatest attributes anyone can have are (1) a positive attitude & (2) a sense of humor - wish Dad had them.

There ensued some months of relative optimism. The cancer was eradicated, my mother's knee improved, and her native hopefulness returned to her letters. She reported that my father had taken first place in a game of bridge: "With his confusion cleared up & his less conservative approach to the game he is doing remarkably well & it's about the only thing he enjoys (& can stay awake for!)." But my father's anxiety about his health did not abate; he had stomach pains that he was convinced were caused by cancer. Gradually, the import of the story my mother was telling me migrated from the personal and the moral toward the psychiatric. "The past six months we have lost so many friends it is very unsettling - part of Dad's nervousness & depression I'm sure," she wrote in February, 1992. The letter continued:

Dad's internist, Dr Rouse, has about concluded what I have felt all along regarding Dad's stomach discomfort (he's ruled out all clinical possibilities). Dad is (1) terribly nervous, (2) terribly depressed & I hope Dr Rouse will put him on an anti-depressant. I know there has to be help for this... if he won't go for counselling (suggested by Dr Weiss) perhaps he now will accept pills or whatever it takes for nervousness & depression.

For a while, the phrase "nervousness & depression" was a fixture of her letters. Prozac briefly seemed to lift my father's spirits, but the effects were short-lived. Finally, in July 1992, to my surprise, he agreed to see a psychiatrist.

My father had always been supremely suspicious of psychiatry. He viewed therapy as an invasion of privacy, mental health as a matter of self-discipline, and my mother's increasingly pointed suggestions that he "talk to someone" as acts of aggression - little lobbed grenades of blame for their unhappiness as a couple. It was a measure of his desperation that he had voluntarily set foot in a psychiatrist's office.

In October, when I stopped in St Louis on my way to Italy, I asked him about his sessions with the doctor. He made a hopeless gesture with his hands. "He's extremely able," he said. "But I'm afraid he's written me off."

The idea of anybody writing my father off was more than I could stand. From Italy, I sent the psychiatrist a three-page appeal for reconsideration, but even as I was writing it the roof was caving in at home. "Much as I dislike telling you," my mother wrote in a letter faxed to Italy, "Dad has regressed terribly. Medicine for the urinary problem a urologist is treating in combination with medication for depression and nervousness blew his mind again and the hallucinating, etc, was terrible." There had been a weekend with my Uncle Erv in Indiana, where my father, removed from his familiar surroundings, unleashed a night of madness that culminated in my uncle's shouting into his face, "Earl, my God, it's your brother, Erv, we slept in the same bed!" Back in St Louis, my father had begun to rage against the retired lady, Mrs Pryble, whom my mother had engaged to sit with him two mornings a week while she ran errands. He didn't see why he needed sitting, and, even assuming that he did need sitting, he didn't see why a stranger, rather than a wife, should be doing it. He'd become a classic "sundowner", dozing through the day and rampaging in the wee hours.

There followed a dismal holiday when my wife and I finally intervened on my mother's behalf and put her in touch with a geriatric social worker, and my mother urged my wife and me to tire my father out so that he would sleep through the night without psychotic incident, and my father sat stone-faced by the fireplace or told grim stories of his childhood while my mother fretted about the expense, the prohibitive expense, of sessions with a social worker. But even then, as far as I can remember, nobody ever said "dementia". In all my mother's letters to me, the word "Alzheimer's" appears exactly once, in reference to an old woman I worked for as a teenager.

I remember my suspicion and annoyance, 15 years ago, when the term "Alzheimer's disease" was first achieving currency. It seemed to me another instance of the medicalisation of the human experience, the latest entry in the ever-expanding nomenclature of victimhood. To my mother's news about my old employer I replied, "What you describe sounds like the same old Erika, only quite a bit worse; and that's not how Alzheimer's is supposed to work, is it? I spend a few minutes every month fretting about ordinary mental illness being trendily misdiagnosed as Alzheimer's."

From my current vantage, where I spend a few minutes every month fretting about what a self-righteous 30-year-old I was, I can see my reluctance to apply the term Alzheimer's to my father as a way of protecting the specificity of Earl Franzen from the generality of a nameable condition. Conditions have symptoms; symptoms point to the organic basis of everything we are. They point to the brain as meat. And, when I ought to recognise that, yes, the brain is meat, I seem instead to maintain a blind spot across which I interpolate stories that emphasise the more soul-like aspects of the self. Seeing my afflicted father as a set of organic symptoms would invite me to understand the healthy Earl Franzen (and the healthy me) in symptomatic terms as well - to reduce our beloved personalities to finite sets of neurochemical coordinates. Who wants a story of life like that?

Even now, I feel uneasy when I gather facts about Alzheimer's. Reading, for example, David Shenk's excellent new book, The Forgetting: Alzheimer's: Portrait Of An Epidemic, I'm reminded that when my father got lost in his own neighbourhood, or forgot to flush the toilet, he was exhibiting symptoms identical to those of millions of other afflicted people. There can be comfort in having company like this, but I'm sorry to see the personal significance drained from certain mistakes of my father's, like his confusion of my mother with her mother, which struck me at the time as singular and orphic, and from which I gleaned all manner of important new insights in my parents' marriage. My sense of private selfhood turns out to have been illusory.

Senile dementia has been around for as long as people have had the means of recording it. While the average human life span remained low and old age was a comparative rarity, senility was considered a natural by-product of ageing - perhaps the result of sclerotic cerebral arteries. The German neuropathologist Alois Alzheimer believed he was witnessing an entirely new variety of mental illness when, in 1901, he admitted to his clinic a 51-year-old woman, Auguste D, who was suffering from bizarre mood swings and severe memory loss and who, in Alzheimer's initial examination of her, gave problematic answers to his questions:

"What is your name?"

"Auguste."

"Last name?"

"Auguste."

"What is your husband's name?"

"Auguste, I think."

When Auguste D died in an institution, four years later, Alzheimer availed himself of recent advances in microscopy and tissue staining and was able to discern, in slides of her brain tissue, the striking dual pathology of her disease: countless sticky-looking globs of "plaque", and countless neurons engulfed by "tangles" of neuronal fibrils. Alzheimer's findings greatly interested his patron, Emil Kraepelin, then the dean of German psychiatry, who was engaged in a fierce scientific battle with Sigmund Freud and Freud's psycho-literary theories of mental illness. To Kraepelin, Alzheimer's plaques and tangles provided welcome clinical support for his contention that mental illness was fundamentally organic. In his Handbook Of Psychiatry he dubbed Auguste D's condition Morbus Alzheimer .

For six decades after Alois Alzheimer's autopsy of Auguste D, even as breakthroughs in disease prevention and treatment were adding 15 years to life expectancy in developed nations, Alzheimer's continued to be viewed as a medical rarity à la Huntington's disease. David Shenk tells the story of an American neuropathologist named Meta Neumann who, in the early 1950s, autopsied the brains of 210 victims of senile dementia and found sclerotic arteries in few of them, plaques and tangles in the majority. Here was ironclad evidence that Alzheimer's was far more common than anyone had guessed; but Neumann's work appears to have persuaded no one. "They felt that Meta was talking nonsense," her husband recalled.

The scientific community simply wasn't ready to consider that senile dementia might be more than a natural consequence of ageing. In the early 1950s, there was no self-conscious category of "seniors", no explosion of Sun Belt retirement developments, no AARP, no Early Bird tradition at low-end restaurants; and scientific thinking reflected these social realities. Not until the 1970s did conditions become ripe for a reinterpretation of senile dementia. By then, as Shenk says, "so many people were living so long that senility didn't feel so normal or acceptable any more". Congress passed the Research on Ageing Act in 1974, and established the National Institute on Ageing, for which funding soon mushroomed. By the end of the 1980s, at the crest of my annoyance with the clinical term and its sudden ubiquity, Alzheimer's had achieved the same social and medical standing as heart disease or cancer - and had the research-funding levels to show for it.

What happened with Alzheimer's in the 1970s and the 1980s wasn't simply a diagnostic paradigm shift. The number of new cases really is soaring. As fewer and fewer people drop dead of heart attacks or die of infections, more and more survive to become demented. Alzheimer's patients in nursing homes live much longer than other patients, at a cost of at least $40,000 annually per patient; until they're institutionalised, they increasingly derange the lives of family members charged with caring for them. Already, five million Americans have the disease, and the number could rise to 15 million by 2050.

Because there's so much money in chronic illness, drug companies are investing feverishly in proprietary Alzheimer's research while publicly funded scientists file for patents on the side. But because the science of the disease remains cloudy (a functioning brain is not a lot more accessible than the centre of the earth or the edge of the universe) nobody can be sure which avenues of research will lead to effective treatments. Early-onset Alzheimer's is usually linked to specific genes, but the vastly more common late-onset variety cannot be traced to a single factor. And the disease's etiology is like the proverbial elephant - it looks like an inflammation of the brain but also like a neurochemical imbalance but also like a disease of abnormal-protein deposition of the kind that occasionally strikes the heart and kidneys.

Treatments currently under study target each of these aspects. People taking cholesterol-reducing drugs or non-steroidal anti-inflammatory drugs (like aspirin or Celebrex) may enjoy a lower risk of Alzheimer's. Those who already have the disease can sometimes be helped for a while with acetylcholine-boosting medications or antioxidants like Vitamin E. There is intense competition among drug companies to develop enzyme inhibitors that zero in on the abnormal proteins. On the immunological front, researchers at Elan Pharmaceuticals recently came up with the seemingly outlandish idea of a vaccine for Alzheimer's - of teaching the immune system to produce antibodies that attack and destroy amyloid plaques in the brain - and found that the vaccine not only prevented plaque formation in transgenic mice but actually reversed the mental deterioration of mice already addled by it. Over all, the feeling in the field seems to be that if you're under 50 you can reasonably expect to be offered effective drugs for Alzheimer's by the time you need them. Then again, 20 years ago, many cancer researchers were predicting a cure within 20 years.